Terrible confession

[Adventurine]

I'm about to say something terrible. And I only say it here because you don't know who I am.

I have a DD who has a neurological condition which can fluctuate. Some days she can walk. Some she cannot. She has tremors, clonus, spasms, dystonia, tics, incontinence, fatigue and complex pain.

This came out of nowhere for her a couple of years ago. Like- boom- now you can't be "normal."

I get how hard it is for her. I really do. But she is so so demanding and I swear she sees me as little more than her personal servant. What really pissed me off this week is that I have Covid, I'm really struggling, my other two kids have Covid, DH has been away for work. She's been off school after a recent spell as an inpatient trying to manage pain around her spine. She is sending me messages like "Mum, can you come and help me move to a more comfy position" and "mum, I'm hungry, can I have noodles" and "can you bring me a cold drink?" But if I don't respond within a few minutes she'll do this relentless whimpering that's so loud you can hear it anywhere in the house. On every outward breath. And she can keep it up for hours.

She can get herself to the loo. She can get herself up to get some chocolate or to plug her phone in or get her laptop. That's no issue. But everything else she seems to want to be served, regardless of how active or inactive her condition is. And this is round the clock. When it's terribly bad, of course I am there, but I don't see that I need to be stuck to her like glue and indulging every demand when it's not!

Today I have said to her that if she makes that kind of whimpering "I'm in agony" noise when she's just being mildly inconvenienced, she runs the risk of not being believed when she is in agony, since people will be so used to hearing it it won't spark any concern. I also told her to be respectful of the fact that I have three children who all need my help at the moment and that I am pretty bloody ill myself, so please dial down the whimpering and the demands, it's not fair, especially when I can literally see she's done stuff for herself like getting chocolates and ice lollies etc.

She didn't send me a message all day and was getting herself about, then just now she's messaged me saying she's in unbearable pain but she's trying to keep it under wraps so it doesn't inconvenience me and her siblings, and she's starving so can I please make her some lunch. She's made herself a sandwich half an hour ago and she seemed fine then. I KNOW when she's in pain. I feel like she's maybe taking out her frustration of her bodily limitations by getting me to do everything? I don't know. She soon snaps out of her infirmity when friends come to visit! Obviously not on terrible days, she wouldn't be able to, but on all the other days where she communicates a sheer inability to do anything so that I have to do it all.... if a friend comes, suddenly she's capable of getting up, doesn't make the whimpering noise, will happily go and get drinks and snacks etc, will do makeup and things.

It's pissing me off and I don't know how to address it properly because she does have a condition that requires an awful lot of support and she attends a school equipped to give it. No learning difficulties, just physical ones. I can't see how to tell her I'm not her goddamn slave without upsetting her and potentially making more work for myself as huge relapses in her condition are often brought about by stress.

AIBU to feel pissed off and really worn down by it?

I'm sorry your daughter is so unwell. That is really shit. And I'm sorry you are unwell too and that you seem to have to manage this by yourself. Life is very unfair sometimes.

@FabFitFifties

Is she getting psychological support OP? She really has learned to be helpless. You will do her no favours pandering to her. Is she like this at school on good days? I bet not. If you haven't already I would seek support from school. You know if you are being loving and fair or not - if she's pulling a fast one, do not cave in. Make her wait, or hopefully do it herself. Let her whimper in those circumstances. Don't let her learn that this gets results. Is she the same with DH? Make sure he follows the same approach as you. She needs to be told you are too poorly to help, when DH comes in. Does she have Covid too? I do feel for her OP but, you need rest to be able to cope with her real bad days, when she does need you💐

She is getting psychological support, yes. She is not like this with DH, she a bit nastier to him. Will give him more of an "I know you don't want to help me" sort of thing. I've told her she's not helpless and when she CAN, she absolutely should do things, because it won't help her in the long run if she doesn't.

I think @WiddlinDiddling’s insight into living with a chronic condition and being reliant on others is really valuable.

Is your dd in touch with anyone who has experienced what she is going through? Someone that is able to validate how she feels and how her condition affects her but has lived experience and coping strategies as described by widdlin?

I’m actually a bit disappointed @SexiestDogWalker as I was thinking this would be something shameful and dark being confessed, whereas this seems perfectly normal to me 😃 YADNBU: you’d be weird not to feel pissed off!

Hope you feel better soon, and lots of good ideas in here for strategies going forward

The condition is irrelevant

The two of you seem to fundamentally get on each other’s nerves and clash

When was the last normal time?
How long did it last?
How is you relationship then?

I'm so sorry, OP. I really feel for you. I absolutely couldn't handle this either. I wish I had some helpful suggestions, beyond firm boundaries, dragging in all the support you can, and remembering it won't be like this forever.

I don't think this is a terrible confession, either. What you said was factual and fair.

It seems normal for your daughter to behave the way she is; I think most teens in the same position would do likewise if they could.

However, even if you could wait on your daughter hand and foot 24 hours a day, it probably wouldn't be recommended. You haven't said what the condition is specifically, but avoiding movement when it's possible not to, is detrimental for almost everyone, both physically and psychologically. We should do what we can, when we can, to maintain strength and self-esteem. If your daughter can move, she should. You've started to respectfully encourage it, which isn't a bad thing.

@loach81

The condition is irrelevant

The two of you seem to fundamentally get on each other’s nerves and clash

No, we don't. The condition is 100% relevant. But thanks for stopping by.

She needs support around managing a long term condition and if it is FNS or functional overlay then ideally she needs specialist rehab as regular rehab will not be effective unless the person accepts the psychological aspect of it. Its very difficult to explain easily but its like blushing, its a physical response to an emotional state / psychological state. So not under her conscious control. Do you have access to family therapy? I think you will need it going forward to avoid an unhealthy enmeshed relationship

So In “normal” times (when was last one?)
This is completely unlike her?

Is she in therapy? She is obviously not managing her feelings and emotions well related to her illness and has an unhealthy dynamic within her 'sick role'. She is also a teen and teens who aren't in pain or dealing with limitations can be difficult. It is a double deal for you.

You know her well and you can set boundaries and there can still be consequences. You want to treat her as normal as you can and you want her to feel and act as normal as she can (within the limits of her condition).

It sounds like she needs therapy to work through these feelings.

Are her demands for things she can do herself only directed at you or does she do the same to her siblings and DH and nurses and everyone?

It is incredibly easy for even adults with disabilities to blur the lines with reliance on others and sometimes carers don't help themselves either (not saying this is you OP!!)

My OH will try and step in and stop me mopping floors or hoovering because frankly it WOULD be easier for him to do it himself, and it does knacker me... but.. I want to keep doing what I can!

It's made even harder that parent and partners and siblings do not get lessons in how to be a good carer, when to step back, when to step in.. and people with disabilities do not get a handbook on how to deal with that either - when is it reasonable to ask someone to scratch your arse for you, or re-adjust your bra strap, when should I just shut-up and hang on?

We have to navigate all this by ourselves and it is an absolute minefield!

And then we still want to keep the original relationship roles as well.. it is not easy for anyone!

If you do have access to the sort of therapy where you can both talk about this, I would absolutely do that!

@loach81

When was the last normal time? How long did it last? How is you relationship then?

What does this mean? When was the last normal time? You mean the last time the condition wasn't so difficult to manage? It's a fluctuating condition. A good day can turn into a bad one and vice versa. There is no cyclical good time/bad time thing.

And we have a good relationship, but I know she's taking the piss, acting helpless during times when she's not and I'm 50% pissed off with the crying Wolf and the long term implications that could have and 50% pissed off that I have Covid which feels like it's shredding my chest every time I cough and that my airway has reduced to about half the size and she's expecting me to be at her side with a snap of her fingers.

@loach81

The condition is irrelevant

The two of you seem to fundamentally get on each other’s nerves and clash

You’ve seen a brief glimpse into their relationship. Where did you get this idea? Op is struggling. On top of being a carer she’s unwell and on her own. They both need respite!

There was a mum at DC's primary school with a disabled son. I thought she was hard as nails. I disliked her. She did nothing for him. Made no concessions for him ever. He has grown up to be incredibly strong and independent, and with hindsight i respect her so much.

Try to turn around the atmosphere so that you are encouraging her and explaining that she can handle it, that you are proud of all she can do. Also encourage her to help others - siblings with homework, you with small bits of cooking etc. Explain to her that long term, she will be so glad to be as independent as possible and that you need to let her struggle a bit to test her own powers and capabilities. It's also OK to say, 'I feel so ill with Covid and it upsets me when you treat me like a ladies' maid when I am shattered and in pain myself. How would you feel if I expected you to be my maid when you feel so ill? Just give me a break and only ask for the absolute essentials until I'm well again.'

I think its absolutely fine for you to toughen up a little OP. Part of your role as her parent is to prepare her for her adult life and part of that is to encourage as much independence as she is capable of. You are not resenting providing the support she needs, you are rightly concerned that she is taking advantage and in doing so not achieving her potential. The more independent she can be, the more satisfying her life will be, and your role is to enable that, not take over every task and responsibility for her.

Not that you need the support OP but, as you say, the condition is absolutely relevant, both because it is the immediate cause for the issues and because the 'fluctuating' nature of the condition would give rise to the ambiguity about whether they are asking for help because they absolutely need it, because they are conserving 'energy' but could do it but might be worse later or because they want to be served when their infirmity is inactive to use your words. As you are not telepathic, you don't know which is which and so have to use your judgment about when help is required or beneficial and when you need to push them to do more themselves. And that when you nfeel tired and under the weather yourself.

Good luck.

MindfulMarch .... Great reply! I'm totally in agreement with you. The daughter is being a typical, lazy arse teenager. So sad that she suffers from an illness, but boy, is she milking it! Mum ..... you know your daughter, you're a great mum doing your best for everyone. Go with your gut instinct, and when you feel daughter is taking the p*, do what you're doing - let her know that she's capable of helping herself, and you aren't her handmaid! Ohh .... and stop feeling guilty, look after yourself, be kind to yourself! xx

'I'm 50% pissed off with the crying Wolf and the long term implications that could have and 50% pissed off that I have Covid which feels like it's shredding my chest every time I cough and that my airway has reduced to about half the size and she's expecting me to be at her side with a snap of her fingers'

OP, I admire your adherence to mathematical completeness but in the circumstances, you are allowed to be more than 100% pissed off. Don't to add some for your DD's illness, for energy prices rising and for normal annoyances too.

Don't have any advice to offer but just wanted to say you sound like a fab mum who is doing her very best under very difficult circumstances. Teens are difficult at the best of times so I'm sure teen + chronic condition is a nightmare.

As PPs have said, it will only be a good thing in the long run for your daughter to learn about independence and self-reliance on the good days and save needing you to run around after her just for the very bad days. I don't think you're being harsh at all - on the contrary I think you will be teaching her invaluable life skills.

Hope you're feeling a bit better soon and DH is able to take some of the strain shortly

I suspect you being ill has given her an awful fright which is why she's really testing your boundaries.
Mum not being invincible, when she's often so helpless is worrying her.

Which is really shit for both of you.
And it will be hard to fix anything whilst you're unwell.

Best of luck and hope you're feeling better soon.

@SexiestDogWalker

Literally just now I've had "can you come and find my remote control... oh, only if it's not too much to ask 😡" And I know that's laden with sarcasm because that's how she is.

It actually is too much to ask, I'm sitting down for the first time today, I have no voice, my throat feels like I've had to gargle razor blades, the cough is so so painful in my chest and my head is pounding. She's now in the bathroom.... so why can't she find her own remote control?? It's things like this that annoy me.

Makes me feel like she's got the attitude of an entitled heiress and I'm her ladies maid.

I have a counsellor friend who sees a family where the child is long-term incapacitated

She visits their home.

Have you thought of that? For both/all of you? It must be tough

* She soon snaps out of her infirmity when friends come to visit! *

Do you doubt the validity of the diagnosis?